27 December 2015

A Special Sibling

What does a parent hope for of the sibling of their child with special needs? 

That when they grow up, they'll care for their sibling, just like you have. 

Which is why we make it a point for Daen to learn to take care of Vera. He's learnt to tube feed and push her in her pram. 

Today I heard him reading to her.

What's the trick? Well, I give him more love. Then tell him to pass it on to Vera. It works.

RDSS Xmas Party

This is the first year we attended the RDSS (Rare Disorders Society Singapore) Christmas party. Vera is a beneficiary.

I sat at the same table as another blogger mum - Mary - who is similarly raising awareness of her daughter's condition, Trisomy 21, or more commonly known as Down's Syndrome, via her blog Simply Lambchops.

Her daughter K is a real sweetie.

Vera stayed awake throughout the event (her usual naptime is 12-2pm) and was exceptionally cheery and engaged. She really seemed to be enjoying herself, with no fussing at all.

She was by my side as well as I sang "Christmas is Christmas", a song that I wrote. 

Here are the words of the Chorus:

"Christmas is Christmas
cos you're by my side
Seeing you glowing I light up inside
You've given me more than I've ever received
I'll keep this Christmas as long as I live."

Who would have thought my little Vera (well, not so little now) would live to accompany me on stage, bringing new meaning to a song written before she was born.

14 November 2015

4 Similarities between Diving and Having a Special Needs Child

Ian and I were avid divers before we had Vera.

Recently, I was musing how diving and having a special needs child have several things in common. 

(This post will make more sense to you if you've dived before.)

1. "Descending": going underwater

Having a special needs child is like going underwater in many ways. You are rolling along, going mostly forward in your life, and when you suddenly have a special child, you pretty much stop in your tracks and go down deep instead. You "descend" into a different space, and like in diving, learn to breathe in a whole new way - through your mouth instead of nose. The experience is alien at first and it takes some getting used to, but it gets more natural with time.

2. "Buoyancy": the ability to maintain your position underwater

At first, it's hard to find the right balance. The early days of parenting a special child are akin to a novice diver going up down up down underwater, pumping too much air into his buoyancy jacket and floating up, releasing too much air and sinking down. With time, you realise that your own body has the ability to fill with air, and you can control your own buoyancy, by acutely tuning in to your own breathing. This is the stage where you get a hang of caring for your special child, and realise that you finally can breathe slower and easier. 

3. "Decompression": the act of staying motionless in the water to allow nitrogen to leave the body

Just as nitrogen builds up in a diver's body the longer he stays underwater, stress builds up in any caregiver of a special child. There are so many burn-out factors: day-long heavy lifting, dealing with behavioural challenges, or events such as seizures or vomiting in the night. Every caregiver needs "decompression time" before they can ascend to the surface. (A much needed massage is in order?)

4. "Buddy System": the process of having mutual support during a dive

Every diver who values his life will go down with a buddy. The special needs journey is hard to walk solo. A partner who pulls his or her weight, a trusted caregiver, are crucial to ensuring the best possible outcome for the special needs child. 

While life is pleasant for those on land, those who have ever dived into the world of a special needs child will know that it holds deep mystery and a pure, raw beauty. Our life happens at half the pace, so that we can appreciate every movement, every expression in the amazing ones before us. 

29 October 2015

Gardens by the Bay

Where's a good haze hideout?

Cloud Forest! I suddenly craved for the fresh mist-filled air at the icy cool conservatory at Gardens by the Bay

With Vera and helper in tow, I picked my 95 year old grandma and headed there. 

Just for 5 minutes of standing at the foot of the man-made waterfall. (5 minutes cos any longer we'd probably catch a cold.)

Young and old enjoyed the spray from the falls. After the Gardens opened 2 years ago, this is the first time Vera has seen it.

It was great to see my grandmother excitedly pointing out flowers all along the way. She'd ask to pose next to them too.

Respironics Amara Petite

The smallest full face mask out there is still too big for Vera. : ( 

Mask search goes on. 

15 October 2015

Aqua Girl

With her awesome teacher Sab

Vera loves the water. I've posted countless times about her in the pool because each session is such an unforgettable experience for me. 

It's when she really comes alive. I see her at her best, moving the most.

I've even put her in a sporty swimsuit now. Indulging perhaps, in dreams of Vera, my little para-olympian.

Eye Infection and High Fever

 Finally finding the time to blog about what's been happening in the past few months. 

After enjoying July, Vera came down with an eye infection in August. With the onset of the yearly haze, we were hardly surprised. 

Daen had a bout of high fever, then Vera went on to have high fever. 

Three days of above 39 deg Celcius, so off to the hospital we went. 

Blood in her secretions, either from inflammation or suctioning.

Makeshift headgear straps
In our haste, we always forget something. This time it was headgear straps. 

Vera stayed in hospital for 5 days.

And the day she got discharged, I developed an eye infection. It was so bad I was out of action for more than a week. 

At the same time, Ian fell very sick. He seldom does. 

Whenever Vera is warded, the frequent trips to the hospital can really run us down.

For Vera, boutsof illnesses are usually followed by diarrhea. Triggered by antibiotic usage of course. 

We had to stop feeds and put her on rice water for an entire week to rest her gut. 

All this while, the choking haze from Indonesia robbed us of fresh air and we were holed up indoors. Fearing respiratory issues, Vera stayed strictly at home. 

So September was rough, but we're okay now.

03 August 2015

Standing Frame for Vera

This is how we used to practise standing with Vera.

Now Robocop Girl is here. Thanks to my mum for sponsoring this standing frame to help Vera stand tall!

Daddy helps put her in.
Music to help her stand for longer.

14 July 2015

Wheat-free Boy

It’s been 2 months since Daen’s arthritis flared up. 

The first time it happened, it took 6 months to tame and 1.5 years of injections.

This time, it seems to have subsided much faster.

It coincides with our decision to take him off gluten (mainly wheat). Gluten has been found to provoke an inflammatory response in the body. With his condition active again, we didn’t want to further tax his body.

Here are some simple changes we’ve made:

Instead of bread or cereal, he eats sweet potatoes and rice. Thankfully there are more and more gluten-free products on the shelves too. Like gluten-free Cheerios : )

For snack, in place of buns, cakes, pastry, we give him nuts, prunes, berries, fruit and gluten-free cookies.
We hope to keep it up.

Now that his flare has subsided, I’m taking a really deep breath and enjoying the calm of July.

04 June 2015

His Arthritis is Back

One year after he went off the injections, Daen's Arthritis is back in both his ankles.

He had one good year.

Now we are back to square one, on weekly jabs of a disease-modifying drug called Methotrexate, and the boy, now older, is not as compliant as before. 

The pain is most evident at night, when the muscles cool down.

Also in the mornings, before they warm up. I have to carry him out of bed. He takes a long time to get ready.

He struggles with tiredness everyday - it comes with the condition. He needs more rest than other kids.

He barely makes it to daycare by 9am. I wonder how, in 2 years' time, he'll have to reach school at 7.15am. 

We ask him what's the pain level is - he says 3/10, sometimes 4/10. 

He says he can manage the 3/10 pain, but not the 4/10 pain. We give him a painkiller called Naproxen, together with Zantac to protect the stomach. He doesn't like the taste of both, but he takes them.

How am I coping? Not very well. 

The return of his arthritis has been quite a blow. Surprising, since the Rheumatologist had already primed us that it would re-surface in 6 months.

Vera can fall sick for weeks, get admitted to hospital, but yet I can deal with it. Because I know that when she falls sick, we can manage and she'll eventually get better. I know what is the likely progression of her Trisomy 18 condition in the coming years. I know that should she fall gravely ill someday, we will have to let her go.

With Daen, it is all a big question mark. Which new joints will the arthritis hit next? Will the MTX work? If they don't, we'll have to add new, more potent jabs. 

Above all, it is the sinking feeling that he'll have to live with this condition for life. Not for 10, 20 years, as in Vera's case, but FOR LIFE. And our boy is just at the beginning of his.

I see him run carefree in the field after school, and I think of the pain that will come when his joints cool down later in the night.

Am I frustrated? Not really. Despair isn't the right word either. It is more a deep, dull, constricting feeling in my heart daily. I find it hard to be happy. 

I guess it stems from helplessness, the feeling that I can do nothing to take the arthritis away. Except to feed him well, with non-inflammatory foods, and give him jabs and painkillers.

Two kids with medical problems. This mothering job can be so hard.

21 May 2015

2015 Give Me A Break!

We're almost at the half year mark, and still have not settled into some much needed routine.

January - 3 weeks of lung infection and non stop suctioning, followed by hospitalisation, then came a fall and re-hospitalisation.

February - Chinese doc visits to cure Daen of his protracted cough. Chinese New Year.

March - Appointments galore: ENT, Sleep Study, Neuro, Speech Therapy, Physiotherapy, Orthotics new Afos.

April - Lee Kuan Yew passes away. Send old helper back. Train new helper. I lost 3 kilogrammes.

May - Vera Gastroenteritis 2 weeks, followed by Daen Gastroenteritis. Both lost weight.

I have been trying so hard to get Vera settled into school but my efforts get thwarted over and over again with all that has been happening since the start of the year.

All these while I attempt to still deliver at my job.

Which was why this Monday, I lost it.

It was a fine sunny day, and I had just gotten Vera ready to enter the pool at school. We'd missed so many hydrotherapy sessions, the most enjoyable part of school for Vera.

Then, there was a lightning alert. We were not allowed to enter the pool.

I stormed to the office. There must be a mistake...it's sunny blue skies!!!

They told me it was activated by the met station.

I called a nearby pool, intent on finding an alternative place, but it was under maintenance.

At that point I felt really disappointed and upset.

Months of emotional strain got to me.

And now the stinger: The pain in Daen's ankle joint is back.

Just thinking about another whole cycle of injections fills me with dread.

Why does life as a parent have to be so hard?

12 May 2015

Water Girl

It has been a long time since Vera had gone into the pool at school. 

Hydrotherapy is once a week, but due her many bouts of illnesses, we have had to stay away from school. 

Yesterday was the second time this year. 

And boy, was she happy to be in the water again. 

Besides the regular duck pedaling that she does, she's now added in vigorous upper body movements. Just this simple improvement brings me such joy. 

In the water, she comes alive, free of the weight of her limbs.

If Vera could tell us, what would she wish for? I'd reckon to swim every day, to be in her element. 

06 May 2015

Bath Chair Base Solution

We've been bathing Vera in this Canetons Bath Chair for years. 

She's really outgrown it, so we've had to look for another bath solution.

1) Our shower area is really cramped.
2) We are looking at a basic special needs bath chair, knowing how costly they are.
3) We have limited space in the bathroom to store it.

We settled on the medium Otter Bath Chair at S$450 from DNR. There is still room for height growth, and the tilting allows us to wash Vera properly.

Next, we needed a base for it to sit on, so we can stand and bathe Vera.

The problem was, the accompanying Shower Stand base was too broad, and could not fit into our shower area. It was also extremely heavy and costly at S$350. Just for the stand.

We had to find another solution for the base.

I got excited when I googled and found another narrower version of the base for the Otter, available in Australia. It would fit our shower perfectly.

But when the quote came back, our jaws dropped: S$995. For a base.

That's when Daddy stepped in to work his magic.

He figured some sort of A frame would suffice. We could custom make it, but then he found this selling in Singapore:

A lightweight, foldable made-in-Japan frame designed to take a man's standing weight. It could lock in place and seemed stable enough. Price of the base: An affordable S$62

The next question was how to secure the bath chair to the base.

Daddy bought two L brackets and riveted them to the base. They would hold the chair bars.

Then he used stretchable hooks to anchor the chair to the base.

Voila! Vera's new bath solution:

The best part: Everything folds neatly under our sink, with space to spare.

Hooray for our handyman!

26 April 2015

Sleep Study Results

I have lost count how many sleep studies Vera has gone through.
I don't stay overnight with her. So far, it's been her caregiver.
I can't bear to see her with all the probes and wires. I lose my cool with the person attaching them.
A sleep study is a misnomer - how to sleep at all with all that stuff sticking to your entire body?
We do it because we need to know what the optimum pressure setting is to support Vera's breathing when she sleeps.
Her settings have gone up slightly, from 15/7 to 17/7.
Her Respi doc says since she has grown a fair bit, this is expected to support her added weight.

25 April 2015

School is Cool

Not a moment of boredom in school.

Now that Vera is in the Primary One of special needs education, the curriculum is packed with activity.

I made the choice to work part-time just so that I can bring Vera to school. 

Of course there is a financial sacrifice, but these precious moments, to be there to capture them, are priceless.

24 April 2015

Poking Her Nose

Vera has started to poke her nostrils with a vengeance.

It's so persistent that sores are appearing.

We don't know what to do except splint her.

We can't be hugging or playing with her all the time to prevent it.

15 April 2015

Vera's Checklist

Checklist of a regular 7-year-old child:

Things to do in 2015
1. Chinese Enrichment
2. Swimming lesson
3. Art class
4. Piano lessons

Checklist of a 7-year-old child with multiple disabilities:

Things to do in 2015
1. Eyes - Detailed eye exam under General Anaesthesia (June)
2. Ears - Detailed ear exam (ABR), get fitted for Hearing Aid, drainage of middle ear fluid under General Anaesthesia (June)
3. Mouth - Begin Oral Tasting seriously and not in an adhoc manner (in progress)
4. Lungs - Get annual overnight Sleep Study done and adjust settings for optimal breathing support (done)
5. Feet - Get new pair of AFOs made (done)
6. Equipment - Get one size up Bath Chair (and figure out how to custom build a base that can fit into your shower area). (in progress)

These are the things Ian and I busy ourselves about.

So what about Daen?

Chinese Enrichment, Swimming lesson, Art class, Piano lessons are all the things I would like to give him, but as of now he is getting none of them. I can't keep it up, even if he can.

07 April 2015

A Rare Gem

At Rare Disease Day 2015 - The disorder may be rare, but the love isn't.
We attended Rare Disease Day for the first time this year, an event organised by Rare Disorders Society Singapore

Through the Society, the struggles of families with children living with rare disorders have been receiving more attention and acknowledgement. 

Despite their extreme physical and mental disabilities - our special children play an important role - in reminding us that our purpose here on Earth is not to strive for more money or more fame, but to care for the frail and fragile amongst us.

30 March 2015

Thank You, Mr Lee Kuan Yew

It has been a hard week for Singapore. Mr Lee Kuan Yew, the man who brought Singapore up, passed on at age 91 on 23 March, 2015.

Singaporeans mourned as a nation, because in our individual hearts, we know so much of who we are today, where we live, how we live, the environment we have, were influenced by this one man's vision. 

While I am saddened, I am glad that Daen got to experience this national event, and is at an age where he would likely retain a memory of it.

Although he never shed a tear, in his picture he is crying, and so are Mummy and Daddy. 

Incidentally, one of the stars is on the other side of the moon.  

Penning down one of his messages at one of the Community Tribute Sites
(He is referring to the Singapore River)

Posting up his message

He is a sensitive boy. 

19 March 2015

Pram Mishap

Daen loves pushing Vera in her pram.

A few days ago, he wasn't looking ahead and her foot hit a wall in the mall.

We all chided him, and he must have felt really bad.

When he came home, he sat down and drew this.

The orange part is her huge foot with bruise.

Thankfully it wasn't serious.

Bedok Jetty

Precious moments together.

02 March 2015

Hearing Test Results

After 7 years of leaving it be, we finally got Vera properly tested for her hearing. 

Here are the results:

What this means is 

1) She can hear, but not very well.
2) Her right ear is better than her left ear. 

Should we fix her with hearing aids, that's the question. Knowing that she'd probably pull them off in 30 seconds.

The more worrying thing is that there is some fluid in her better right ear (middle ear problem).

Anyone has dealt with that before? 

23 February 2015

Vera is 7

Vera has turned Seven. We had a small family gathering after all the big celebrations during the Chinese New Year.

This year, Daen gets into the swing of the preparation with vigour. 

Early start for Daen to go and get flowers for Vera. 
He decided on the gifts that he was going to get her - "one orchid and one tulip" and the card that he was going to make. (He ends up drawing three.)

He takes his role as host very seriously - getting guests to make wishing cards, starting the keyboard accompaniment for the birthday song, and finally helping Vera to cut the cake. 

When I told him it was the role of the birthday child to give out the cake to the guests (not to cut the cake which he adamantly wanted to) he said, "But Chea Chea can't walk" so he promptly went about giving out the cake. 

Everytime I see Daen caring for Vera, at this young age, I know I'm looking at something so pure and beautiful that nothing in this world can replace. 

Getting into art and craft mode for the deco

Cousins to help blow the candles

Old mama (my grandma) makes her smile

With Gong Gong